hospital

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The Surgery Saga

Published January 22, 2013 by crazyinpink

Okay, saga is perhaps too dramatic but I do want to talk about my recent operation.
I went into hospital on the 9th January for all my prep (injections, drips, yucky stuff that clears out your bowel) and went to theatre the next afternoon for ‘radical excision of endometriosis’.

The op was a success, I am very pleased to say! That night, still under the influence of morphine, I had (or rather my mother had asked someone) been told that the surgery went as planned but until my doctor came, I had no more details. Happy enough that nothing had gone wrong and they had obviously done what they had intended, I settled down for the night in my surgical stockings with random things around my legs that inflated alternately and my many drips and oxygen.

Two hours later, I was woken up by a nurse who had to take my blood pressure, etc. She noticed that my pelvic drain wasn’t working properly. My catheter seemed to be working fine but hardly anything was coming through the much thicker tube coming out of me. She bustled off to find a new container for the end of the tube and clamped it so she could change them around. Once she had the new container in place, she warned me that I might feel a ‘tug’ when she unclamped and the suction started working. The ‘tug’ was without a doubt, the worst pain I have ever felt. I wasn’t even totally aware of where the drain was coming from until then but it was inserted in one of my wounds, inches below my belly button. I instantly started crying with the pain. The nurse, sympathetic, told me it was a sign that it was working properly and held up the new container to show me the amount of blood that was already pouring into it. Better out than in. After an hour, she gave me some tramadol to help with the pain. Tramadol is good but as I am on it daily, it didn’t even touch this excruciating pain in my pelvis. A few hours later, I started throwing up with the pain, something which has never happened to me before. After that, I got an injection for the sickness and IV paracetamol. Again, it didn’t even touch the pain. By the time a doctor appeared in the morning, I hadn’t slept and the pain was still as intense as it had been at first. I was hoping I would pass out from it so I wouldn’t have to feel it anymore. When the doctor came to check on me, I instantly begged to have the drain removed. He noted how distressed I was and asked a nurse to remove it asap. Around an hour or so later, the nurses clamped the drain. I felt instant relief. It was another 15 minutes before they actually took it out but as soon as the suction stopped, the pain vanished. Having it removed wasn’t a picnic but I was just so glad it was being removed, I didn’t even care. I watched as the nurse gently pulled out over 6 inches of tube covered in blood.

By the time my consultant came to see me that afternoon, I was a different person. I was washed, changed out of my gown into pyjamas and although I still had my catheter in, I felt amazing compared to the night before. He told me the details of the operation.
More endometriosis had grown since my last lap in July. Back then, he had found it on the outside of my uterus, vagina and lining the pelvic wall. This time, it had spread to both sides of the vagina, both sides of the rectum, along the back of the pelvic wall and onto my bowel. He showed me roughly how much they had cut out – around the size of a side plate. There was a small amount on my bowel that was in too dangerous a position to try to cut out so he had left it alone. Answering my questions about this remaining bit, he said that it was miniscule compared to the amount he cut out, only about 1% of the entire diseased tissue. He warned that because he had to cut quite deeply into good tissue, especially around the pelvic wall, my insides were raw and would take a few months to heal. I might not feel the benefits of the removal until they all heal completely but he was very confident that I would see a massive reduction in my symptoms.

As he did in July, he said well done and squeezed my knee. Technically, it should have been the other way around…I just slept there while he did the complex surgery but I knew what he meant. Along with practically every other doctor I’ve seen, he had argued with me that I couldn’t possibly have endometriosis and only agreed to do a laparoscopy because I insisted and fought him to get it. I was right all along. No one knows my body as well as I do and while I might not be a doctor or a specialist, I knew that what I was going through wasn’t normal. I knew it wasn’t in my head though countless people insisted it must be.

The surgery itself wasn’t really a saga. But my journey to get here was. If I accepted the doctors and everyone else when they told me there was nothing wrong with me, I would never have been given a positive diagnosis. I would be on anti-depressants for this phantom pain that they thought I was making up. I would still be in pain from the aggressive disease that would still be inside me.

But I’m not. Now nobody can say it’s all in my head. I have proof that I was so riddled with a disease that it grew so aggressively even within six months. The war might not be over but I’ve won this battle. And now I’m recovering in relief.

A little bit of twitter-inspired philosophical wonderings…

Published August 21, 2012 by crazyinpink

A new endo twitter account appeared a few days ago.  The general point of the account is to provide support and some kind of comic relief for endo fighters (I dislike calling us ‘sufferers’ because it kind of implies that the disease controls us, at times it does feel that way but I much prefer the term ‘fighters’).  I noticed the account quite early on (being somewhat addicted to twitter) and as I tweet about my life with endo quite a bit, I have been retweeted by the account. 

I like the account.  I think it is witty and honest and relatable.  I don’t agree with every tweet but I think it is a good thing and certainly helps bring endo sisters together because it is so active.

However, I noticed the other day that not everyone is supportive of this new account.  I saw a tweet which piqued my curiosity and so I read the conversation surrounding it.

One endo fighter took an aggressive tone when she asked the girl who owns the account to leave her alone.  She claimed the account was stupid, there was nothing at all humorous about endo and it was flippantly making light of her pain.  The conversation continued with more and more bitter comments from her side.  To her credit, the girl who runs the account responded very maturely and diplomatically to what was essentially, verbal assault.

This little, seemingly insignificant, exchange made me think about how people can react to something as life-changing as a chronic illness.

There are always going to be people who are naturally optimistic and upbeat, who keep going no matter what and as Eric Idle would say ‘always look on the bright side of life’. (do do do do do do do do)  Likewise, there are going to be people who think their world has ended and fail to even look for the light at the end of the tunnel.  Most of us will oscillate between the two extremes during our own individual journeys.   The thing is, to keep travelling.

Since I got really ill three and a half years ago I have experienced my fair share of ways to cope with it.  When I first collapsed and in the weeks following, sheer panic occupied my every waking minute.  My body was being attacked from the inside and I didn’t understand why.  I wasn’t having periods yet I was experiencing the worst kind of period pain x 100.  I knew I had endo and it had been removed a year earlier, why was the pain back?

Slowly, I adjusted to my new kind of life.  I had to wear skirts instead of jeans (something which was entirely alien to me), tasks I could have done in a day all of a sudden took me at least three or four and my gorgeous, bass playing boyfriend broke up with the new me.  I resigned myself to waiting.  I was waiting to see someone, waiting for them to tell me it was the endo again and waiting for them to take it away like they had before. After months of waiting, I was told it wasn’t endo.

I felt lost and confused.  It felt exactly the same as it had done before, only worse. My GP, convinced I had Irritable Bowel Syndrome, put me on stupid treatments to make me go to the toilet more. This I remember as the Embarrassing Stage. Documenting everything I ate, every time I went to the loo, describing everything that happened there. I was only 20 and I had a colonoscopy. Shockingly to the doctors, but not to me, there was nothing wrong with the inside of my bowel.

Frustration set in as time and time again I was put on stupid treatments that never made any impact on my level of pain.  Eventually, I talked one consultant (after he insulted me and suggested I lose weight) into giving me a MRI. The scan showed a multitude of cysts covering my ovaries.  The right one was practically hidden under the sheer volume, 13 that they could count.  This led to a referral to gynae for poly-cystic ovarian syndrome. They then decided to put me through an artificial menopause. This was the Nothing-Can-Be-Worse-Than-This-Hell stage when I hated everything and everyone, especially me. This was a low period as my body rejected the treatment and I ended up spending the Easter holidays in a hospital bed.

What emerged though was the new me. I began to accept that the magical solution I’d been holding on for might never come.  Instead of wasting this period of my life waiting for things to get better, I should make things better for myself now. I began to fight. I fought the doctors and insisted on recognition.  I stopped being embarrassed by my body and learned to love all of me, right down to the burns left by my ever-present hot water bottle. I realised that being ill and living with chronic pain has actually made me into a better person than I once was.  I have more patience, more sensitivity and found a strength I never knew I had. 

Things haven’t been easy. In November last year when my consultant changed his mind about my condition, I hit a really low point again but I bounced back. And I will keep bouncing back. However many times it takes.

Sometimes, we need a bit of humour and a bit of encouragement.  I understand why it can be hard to see the silver lining at times but if you don’t look for it, you’ll never find it. 

How I fought the NHS…and won

Published July 23, 2012 by crazyinpink

Last week I had my laparoscopy and guess what? I have endometriosis!  A diagnosis I had five years ago, only to be told a year later that there was no chance it could have returned.

Three and a half years of unbelievable pain, pain that has affected every area of my life and made me a vastly different person from the girl I once was. But before I get too philosophical, let me tell the tale of my surgery.

I arrived at hospital early last Tuesday morning, apprehensive and in a fugue state thanks to the lack of caffeine in my blood stream.  The nurses did all their checks, sent my Mum off and got me changed into a fetching backless hospital gown and dressing gown combo.  Abandoned in a grey corridor, reading Harry Potter and the Half Blood Prince, I was eventually visited by a member of the surgical team.  As she went through yet another checklist with me, my consultant appeared.  He is the only endo specialist in my area (possibly country, since we’re so tiny) and highly praised by nearly everyone at support group.  My feelings toward him were decidedly mixed.  He was the first gynae to ever really listen, to acknowledge my pain diaries and tried his best to understand what my life is like.  But he also was adamant that I did not have endo.  The first time I saw him, he said it was bound to be endo.  Then, after receiving all my notes and scans from other hospitals, changed his mind.  He would not have operated if I hadn’t demanded it.  Back in January he left the decision up to me.

I made the right decision.  He warned me, sympathetically, that he might not find anything whe he looked inside.  He told me to prepare myself in case there was nothing there.  I must be the only person under his care to go into an operation hoping they find something.  After a frustrated anaesthatist finally found a vein (mine are notoriously difficult to find) we were off.  I woke up in recovery in that wonderful post-anasthetic bliss, barely able to move. I dozed on and off until my doctor arrived to speak to me.  He told me that they found endometriosis on the back wall of my vagina, uterus and all along my pelvic wall. He waited for my reaction.  I asked him to repeat what he had said. He confirmed that he had replaced my Mirena but there was too much endometriosis to remove then and I would have to come back for a bigger operation.  I’m on the ‘urgent’ list as he wants to get rid of it asap.  Before he left, he turned back and squeezed my shoulder, saying ‘You did very well. Well done.’

A nurse came over soon after he left to make sure I was okay and give me some tissues.  I was crying, not because I was upset but with relief.  It was over!  All my fighting was over.  They knew.  They knew that I am ill, that I do have this disease, that I wasn’t making it up, it wasn’t all in my head.  I had finally come to the end of three and a half years of pain limbo.

Of course, it is not great news that I have so much of the disease. The fact that my first lap five years ago removed a small amount on my left ovary yet now my pelvis is riddled with it is not exactly cause for celebration.  I have not given much thought to the implications this will have on my life.  The extensive amount is bad enough but where it is – that’s a whole other matter.  I have so many questions.  Will it hurt when I have sex? Has it affected my other organs? If I ever get pregnant, will I be able to carry a baby in a uterus so scarred?

I’m trying not to focus on these big scary issues.  As they say in How I Met Your Mother, those are things for Future Me to deal with. Right now, I just want to be glad that I finally (FINALLY!!) have a confirmed diagnosis and that they can now do something to help me. I no longer have to fight the system, the doctors, the specialists, the NHS in general.  Now all I have to do is fight this disease.

Twas the night before hospital

Published July 16, 2012 by crazyinpink

The long wait is nearly over.  Tomorrow morning I go into hospital for my laparoscopy.

I’m now quite nervous.  I fought so hard to get to this point.  Even my consultant thinks its a waste of time.  I finally convinced him by pointing out that I have to get my Mirena implant changed before January and because I’m a virgin, they have to knock me out to do it.  So, I said, if you’re already going to have to knock me out for that, why not have a wee look around while you’re in there?  He laughed and said he admired my guts.

I don’t know how to prepare myself.  Everything could change.  My ovary could be really damaged.  There might be endo. There might not be endo.  It could just be scar tissue from when they lasered the endo off four and a half years ago. It could be adhesions. There might not be anything.

And the Mirena.  I know it doesn’t work the same for everyone but for me, its meant four and a half years with no periods.  And when you spent your teenage years dreading that time of the month which in my case lasted 15 days filled with pain and severe bleeding…not having that has been a miracle.  I don’t know how I would cope if this one didn’t work as well and if I start having periods again.

I know I will though.  Whatever tomorrow brings, I’ll handle it.  It might take a while but I’ve dealt with so much up to this point and I really feel like this could provide some answers. Today is just so nerve-wracking.

 

See you on the other side.

Going to hospital…

Published March 13, 2012 by crazyinpink

I have to go to hospital today 😦

I’ve had an abscess for three weeks. Two rounds of antibiotics didn’t shift it and so, I was emergency referred to a consultant. That was a week ago and I’m going a little bit crazy. I’m so uncomfortable and in a lot of pain. I barely slept last night. The doctor said if it got worse, I should go to A&E. I really didn’t want to but I don’t think I have much of a choice.

I came into work this morning anyway but I was nearly in tears as I signed in and asked if I could take a half day. Fortunately, the people I work for are lovely and always understanding when I’m not well.

I’m going to go home and have a bath now, then my mum will take me up to hospital. I really hope they remove this awful thing…I also hope it isn’t too painful. And I hope the recovery won’t take too long. I’ve already missed a few classes this semester and I’m supposed to have a date on Friday night.